and sh****ng through the 'eye of a needle' :(
Being beautifully cared for by special friends who bring food, prepare it, serve it, clean up afterwards, change bed linen, take washing away, bring crosswords and newspapers and books, entertain me - and bully me to remember to take enough fluids and food to keep me going.
Today is a public holiday (Monday 13 June - Queen's Birthday). Tomorrow I consult the oncology people to see what the next step is. They told me to go to the hospital if I was in trouble over the long weekend. Fortunatley that has not been necessary.
More later
Sunday, June 12, 2011
Saturday, June 11, 2011
Boo Hoo
Today (Saturday 11 June) I was to officiate at Kellie and Sean's wedding at Lavender Bay at 3pm. I couldn't because I have been laid low for the past week with gastro. Whew! Is it awful!!!!
Since I last wrote I spent a beaut couple of days in the Hopemobile around the Pittwater area. The night's were cold, but the days were warm and sunny if you stayed out of the wind. ALL OK.
Unfortunately on the second night, when I was camped near Palm Beach, my innards started to rumble and the gastro set in. Nothing for it, of course, than to set course for home very quickly. There's no place like home when things aren't right.
And I've had to stay close to home all week - apart from visits to the doctor and a quick trip to the local library.
Consultation with those who know informs me that it is my reaction to this new chemo regime. I have been given medication, had blood tests, told what to eat and drink (keeping the fluids, salt and sugar up) and - basically told that I have to ride it through.
It started on Tuesday night - it's now Saturday and I'm still suffering. Yuk :( Hence I had to call my friend, Denise, who is also a celebrant, and ask her to perform the wedding ceremony for me today.
I am anxiously waiting at home, with the phone nearby, to hear that it all went well. Whew! She called and all went well.
Bye for now.
Since I last wrote I spent a beaut couple of days in the Hopemobile around the Pittwater area. The night's were cold, but the days were warm and sunny if you stayed out of the wind. ALL OK.
Unfortunately on the second night, when I was camped near Palm Beach, my innards started to rumble and the gastro set in. Nothing for it, of course, than to set course for home very quickly. There's no place like home when things aren't right.
And I've had to stay close to home all week - apart from visits to the doctor and a quick trip to the local library.
Consultation with those who know informs me that it is my reaction to this new chemo regime. I have been given medication, had blood tests, told what to eat and drink (keeping the fluids, salt and sugar up) and - basically told that I have to ride it through.
It started on Tuesday night - it's now Saturday and I'm still suffering. Yuk :( Hence I had to call my friend, Denise, who is also a celebrant, and ask her to perform the wedding ceremony for me today.
I am anxiously waiting at home, with the phone nearby, to hear that it all went well. Whew! She called and all went well.
Bye for now.
Friday, June 3, 2011
Claiming Chemo Brain!
Well, this morning I duly fronted up at the day hospital for my next infusion. The appointment was for 11am, so I went out to find my rough road on which to torture my bare feet. Found one not so far from home - by car. The people driving and walking their dogs to the beach along the street averted their eyes as I approached, so I just chirped 'good morning' and kept going. I don't think I mentioned that I have to pat my tummy below the navel - and my bottom, with alternate hands with each step I take. That might help you understand why the eyes were averted.
I've been pounding my chest, massaging my ears and rubbing my liver and spleen ever since.
While I was driving back home from this exhilirating morning exercise (at least the sun was shining), I received a call asking if I could come early for my treatment. As I had left the day completely free, except for food shopping which could wait 'til after the treatment, I agreed to go in early. I went home and had breakfast, took relevant tablets, showered and got myself there at 10.15am. Not bad, I thought.
I settled myself in on one of the new purple lazyboy chairs with swivel table for cuppas and odds and ends. The delightful nurse hooked me up and I got out my book to read.
The nurse asked me something about the Xeloda tablets I was taking and if I had taken them for 14 days after the last infusion. Disaster, dismay, tears (yes, I lost it momentarily). I told her that no-one had told me to take them for 14 days and then have 7 days free before the next infusion! Went she commented that I had been on this treatment before and thought I would remember, I reminded her that that was way back in 2007-8, and that I had been through an amazing amount of stuff since then and didn't actually recall that detail. I'm claiming chemo brain :)
She went away into a huddle with the NUM and came back to tell me not to take any Xeloda tablets for the next week. Instead of having my week free of it at the end of the 3 week cycle, I should have it at the beginning.
So, just a note to self - try to ask every question you can when going on to a new/old treamtent. Don't ASSume anything.
Note to nursing staff - don't ASSume that the patient knows ANYTHING. They'll tell you if they do.
May I say that I love all the staff at the day hopsital. They do a great job, create a stress-free atmosphere and I couldn't imagine being cared for by any better nurses.
So.... I have a few days free of any medical or social or family commitments and the Hopemobile is coming out of its carport. Kur-ring-gai National Park, Pittwater and Palm Beach - here we come for 3 days - Sunday to Tuesday. I'll take pics.
After my treatment today I did the food shopping, went out with friends for a cuppa at the golf club, called in to First Friday drinks with old rugby club mates, had a Vietnamese takeaway meal with a great friend in front of the heater at home while we finshed the cryptic crossword. Am in bed now and can't sleep. It happens every time - first 2 nights after the chemo infusion. I wish I could remember each time. I'm claiming chemo brain.
Right now it's 12.45am on Saturday 4 June 2011 and I'll probably fall asleep just as I want to get up to meet my walking group for a cuppa at 8am, after their walk. .... never in control :( but trying :)
I've been pounding my chest, massaging my ears and rubbing my liver and spleen ever since.
While I was driving back home from this exhilirating morning exercise (at least the sun was shining), I received a call asking if I could come early for my treatment. As I had left the day completely free, except for food shopping which could wait 'til after the treatment, I agreed to go in early. I went home and had breakfast, took relevant tablets, showered and got myself there at 10.15am. Not bad, I thought.
I settled myself in on one of the new purple lazyboy chairs with swivel table for cuppas and odds and ends. The delightful nurse hooked me up and I got out my book to read.
The nurse asked me something about the Xeloda tablets I was taking and if I had taken them for 14 days after the last infusion. Disaster, dismay, tears (yes, I lost it momentarily). I told her that no-one had told me to take them for 14 days and then have 7 days free before the next infusion! Went she commented that I had been on this treatment before and thought I would remember, I reminded her that that was way back in 2007-8, and that I had been through an amazing amount of stuff since then and didn't actually recall that detail. I'm claiming chemo brain :)
She went away into a huddle with the NUM and came back to tell me not to take any Xeloda tablets for the next week. Instead of having my week free of it at the end of the 3 week cycle, I should have it at the beginning.
So, just a note to self - try to ask every question you can when going on to a new/old treamtent. Don't ASSume anything.
Note to nursing staff - don't ASSume that the patient knows ANYTHING. They'll tell you if they do.
May I say that I love all the staff at the day hopsital. They do a great job, create a stress-free atmosphere and I couldn't imagine being cared for by any better nurses.
So.... I have a few days free of any medical or social or family commitments and the Hopemobile is coming out of its carport. Kur-ring-gai National Park, Pittwater and Palm Beach - here we come for 3 days - Sunday to Tuesday. I'll take pics.
After my treatment today I did the food shopping, went out with friends for a cuppa at the golf club, called in to First Friday drinks with old rugby club mates, had a Vietnamese takeaway meal with a great friend in front of the heater at home while we finshed the cryptic crossword. Am in bed now and can't sleep. It happens every time - first 2 nights after the chemo infusion. I wish I could remember each time. I'm claiming chemo brain.
Right now it's 12.45am on Saturday 4 June 2011 and I'll probably fall asleep just as I want to get up to meet my walking group for a cuppa at 8am, after their walk. .... never in control :( but trying :)
Wednesday, June 1, 2011
Not good news
Well, I've had the blood test and seen the oncologist for the results. The good news is that the liver function is on the improve :)
Unfortunately, the not-so-good news is that the tumour marker is increasing in its measurement, which means there is more cancer activity in my body. Disappointing - and a bit scary :(
The oncologist suggests that I continue with the chemo for one more round. An effect is not often seen until after 2 rounds. So ....... I go back to the day hospital on Friday morning to have another infusion and continue taking Xeloda tablets for the next 3 weeks.
At that time I'll have another blood test and if the result is as it was this week, I will have another PET scan to get the real picture.
Today (Wednesday) I visited the Chinese herbal doctor/acupuncturist. He looked at my blood test results as well as taking my pulse and looking at the colour of my tongue. He was not pleased. I also told him about the more frequent headaches I have been suffering lately. He gave me a series of exercises to do as often as possible. They are the 'do-it-at-home' acupuncture to stimulate the T-cells (which fight cancer) and boost the immune system.
So, if you see me beating my chest, massaging my ears , rubbing my spleen and liver areas and walking barefoot on rough roads............... please indulge me..... you might even like to join me :). Dr. Chen assures me that if I follow his instructions explicitly, I will have a better result with the next blood test. Certainly hope so.
In the meantime, I'm keeping my mind busy with
1.plans for a weekend of activities in Sydney with friends - which includes conducting a wedding at Lavender Bay...and
2. a week's holiday on Norfolk Island in August - with the same very special friends whose support and love have kept me going for the past 5 years - along with lots of family and friends, both near and far.
My son, Tim, is off tomorrow for a 2 week holiday in Thailand. My daughter, Nikki, is preparing herself for climbing Mt. Kilimanjaro in September. And my grandson, Zeke, has just earned his very first colour belt in Karate. We are all so proud of him and he is bursting with pride.
Today is 1 June. I'm so glad that the coldest May in 40 years is behind us.
Unfortunately, the not-so-good news is that the tumour marker is increasing in its measurement, which means there is more cancer activity in my body. Disappointing - and a bit scary :(
The oncologist suggests that I continue with the chemo for one more round. An effect is not often seen until after 2 rounds. So ....... I go back to the day hospital on Friday morning to have another infusion and continue taking Xeloda tablets for the next 3 weeks.
At that time I'll have another blood test and if the result is as it was this week, I will have another PET scan to get the real picture.
Today (Wednesday) I visited the Chinese herbal doctor/acupuncturist. He looked at my blood test results as well as taking my pulse and looking at the colour of my tongue. He was not pleased. I also told him about the more frequent headaches I have been suffering lately. He gave me a series of exercises to do as often as possible. They are the 'do-it-at-home' acupuncture to stimulate the T-cells (which fight cancer) and boost the immune system.
So, if you see me beating my chest, massaging my ears , rubbing my spleen and liver areas and walking barefoot on rough roads............... please indulge me..... you might even like to join me :). Dr. Chen assures me that if I follow his instructions explicitly, I will have a better result with the next blood test. Certainly hope so.
In the meantime, I'm keeping my mind busy with
1.plans for a weekend of activities in Sydney with friends - which includes conducting a wedding at Lavender Bay...and
2. a week's holiday on Norfolk Island in August - with the same very special friends whose support and love have kept me going for the past 5 years - along with lots of family and friends, both near and far.
My son, Tim, is off tomorrow for a 2 week holiday in Thailand. My daughter, Nikki, is preparing herself for climbing Mt. Kilimanjaro in September. And my grandson, Zeke, has just earned his very first colour belt in Karate. We are all so proud of him and he is bursting with pride.
Today is 1 June. I'm so glad that the coldest May in 40 years is behind us.
Wednesday, May 25, 2011
Oops. It's been a while :)
Almost 2 weeks! And it's been a busy 2 weeks.
But back to the chemo, briefly. As well as the infusion every 3 weeks, I also take oral chemotherapy every morning and night. The combination is Folfox (infusion) and Xeloda (tablets). So there's not even a week OFF on this regime.
My busy 2 weeks, started when I drove to Rydal (daffodils in spring) on Monday afternoon to stay with my friend, Anne, for a couple of nights. As with anywhere over the range, the seasons are very pronounced. The autumn colours were magnificent, daffodils were being planted, there was frost on the ground in the morning - but the days were sunny and warm.We had a lovely time catching up with all our news. It was amazing to hear about Anne's trip to Scotland to visit the Outer Hebrides Islands. She flew off yesterday for 5 weeks.
From Rydal I drove to Ryde to visit my Chinese herbal doctor who asked me how I was feeling - of course. When I told him what my complaints were - particularly the pain in my lower gut from the Xeloda, he gave me the appropriate acupuncture needles and the pain disappeared - and it hasn't returned since. It feels sooooo good.
The next day I flew to the Gold Coast to spend time with my son, Tim, and his son, Oscar. We had fun reading stories, kicking balls, riding scooters, going to the coffee shop for his vegemite scroll and my green tea and just generally hanging out :)
Oscar in bed waiting for a story from Mumma Tez XX
Oscar with his swimming teacher, practicing 'big arms'
I also attended one day at the POWERtalk Australia annual conference. It was wonderful to see so many long time friends again and to enjoy the professional presentations that were on offer. My congratulations to the conference committee for providing such a valuable learning, networking, speaking, fun experience.
It was beautifully warm on the Gold Coast, so I didn't need to use the gorgeous possum wool gloves that my friend, Judi, delivered from New Zealand. Thanks JJ :). And I didn't have pins and needles in my hands once.
But I'm certainly wearing them now that I'm back in Wollongong. It's really quite cold - well - 17'C - that's cold for here.
Yesterday I had yet another blood test and will see the oncologist on Tuesday for the results. I'm not sure if there is likely to be any measurable change in the readings after only 2 weeks on this new chemo. We'll see.
Last night I attended a brilliant concert. The Australian Chamber Orchestra is touring and comes to Wollongong for one concert each tour. Touring with them is 'the dancing clarinetist' Martin Frost. If you click on his name, you will be taken to his website. It says "Martin Frost has to be heard to be believed". I agree, but he also must be seen to be believed. It was magical :)
Friday 27 May @ 7pm
But back to the chemo, briefly. As well as the infusion every 3 weeks, I also take oral chemotherapy every morning and night. The combination is Folfox (infusion) and Xeloda (tablets). So there's not even a week OFF on this regime.
My busy 2 weeks, started when I drove to Rydal (daffodils in spring) on Monday afternoon to stay with my friend, Anne, for a couple of nights. As with anywhere over the range, the seasons are very pronounced. The autumn colours were magnificent, daffodils were being planted, there was frost on the ground in the morning - but the days were sunny and warm.We had a lovely time catching up with all our news. It was amazing to hear about Anne's trip to Scotland to visit the Outer Hebrides Islands. She flew off yesterday for 5 weeks.
From Rydal I drove to Ryde to visit my Chinese herbal doctor who asked me how I was feeling - of course. When I told him what my complaints were - particularly the pain in my lower gut from the Xeloda, he gave me the appropriate acupuncture needles and the pain disappeared - and it hasn't returned since. It feels sooooo good.
The next day I flew to the Gold Coast to spend time with my son, Tim, and his son, Oscar. We had fun reading stories, kicking balls, riding scooters, going to the coffee shop for his vegemite scroll and my green tea and just generally hanging out :)
Oscar in bed waiting for a story from Mumma Tez XX
Oscar with his swimming teacher, practicing 'big arms'I also attended one day at the POWERtalk Australia annual conference. It was wonderful to see so many long time friends again and to enjoy the professional presentations that were on offer. My congratulations to the conference committee for providing such a valuable learning, networking, speaking, fun experience.
It was beautifully warm on the Gold Coast, so I didn't need to use the gorgeous possum wool gloves that my friend, Judi, delivered from New Zealand. Thanks JJ :). And I didn't have pins and needles in my hands once.
But I'm certainly wearing them now that I'm back in Wollongong. It's really quite cold - well - 17'C - that's cold for here.
Yesterday I had yet another blood test and will see the oncologist on Tuesday for the results. I'm not sure if there is likely to be any measurable change in the readings after only 2 weeks on this new chemo. We'll see.
Last night I attended a brilliant concert. The Australian Chamber Orchestra is touring and comes to Wollongong for one concert each tour. Touring with them is 'the dancing clarinetist' Martin Frost. If you click on his name, you will be taken to his website. It says "Martin Frost has to be heard to be believed". I agree, but he also must be seen to be believed. It was magical :)
Friday 27 May @ 7pm
Friday, May 13, 2011
Pics of last weekend and new chemo
I want to share this website with you. There are webcams out in the national parks in South Africa, strategically placed by the water holes so that the animals can be viewed when they come to drink. Early morning and dusk (South African time) are the best times to see the animals come to drink. Take a look and enjoy. SA time is 8 hours behind Sydney.
The following few pics were taken last weekend when I went to Cowra with Tim and Debs to stay with her parents at their property.
The farmer and his stock
Boys working on the fences
Mother's Day breakfast in the sun. Terrie, Ross, June and Tim. Debs took the photo.
Koi in the pond at the Japanese Gardens in Cowra
The pond at the Japanese Gardens
Overlooking the Japanese Gardens
It was a wonderful way to start the week. I was a back seat passenger with a pillow for the 4 and 1/2 hour journey. Tim's flight was cancelled and he had to wait 4 hours for another flight so we arrived very late.
It was a beaut couple of days.
So....... I started the new chemo regime on Friday. No pump this time, just an infusion for 2 and 1/2 hours. Happy environment with lots of chat among the patients and the nursing staff. I finished knitting a pair of socks and talked to a couple who do a lot of caravaning. Very productive morning.
Then off to lunch with some special friends and home to rest for the rest of the afternoon and evening.
Side effects of this chemo - sharp tingling in hands when cold. And, of course, IT'S BLOODY COLD RIGHT NOW!!!! My hands started to tingle as I left the chemo clinic - cold door handle, cold wind. So I hurried home and dug out my gloves. I wear a white cotton pair when I'm the house and a respectable grey woollen pair when I step outside. You just don't realise how often you touch the cold fridge door, as you open and close, and fridge contents :), turn on the cold water tap in the kitchen and the bathroom! So... all the ingredients from the freezer and fridge that I will need for dinner tonight are out on the kitchen bench all day today so that they won't be too cold when I peel and chop without gloves.
One of my friends, who is coming to the Gold Coast next week, is bringing me a pair of possum wool gloves. Possums are pests in NZ as they are not native to the country, so they make lots of garments from their wool. It is beautifully soft and warm.
I'll be on the Gold Coast next weekend, in fact I'm going for 6 days, to stay with Tim and Oscar and to attend the National Conference of POWERtalk International - on Friday and Saturday. I'm looking forward to catching up with lots of very special, long term friends.
Right now it's 2pm on Saturday 14 May and I've been gallivanting all morning. Time to stop and rest.
Monday, May 9, 2011
Chemo, scan, cloud, silver lining
Just quickly - because I'm not in the right frame of mind for a lengthy message
1. Regular blood test prior to next round of chemo
2. Results not good - cancer markers have increased, so chemo is cancelled. Bad news, good news.
3. Referred for PET scan at Royal Prince Alfred Hospital to see what's going on inside
4. PET scan this morning (Monday)
5. Visit to oncologist this afternoon for results
6. Results not good - tumours have grown slightly and there are some spots on one of my lungs which may be metastases (new secondary tumours)
7. We have run out of options for chemotherapy and I am sticking with my decision not to have surgery
8. Oncologist recommends treatment with the chemotherapy that I had way back in 2006 which did not work on the original tumours in my liver. He says that the tumours I have now are different from the original and there may be a chance that they will respond to the treatment.
9. Start new chemotherapy regime this Friday with an infusion every 3 weeks - but just a 2 hour session at the clinic and no pump to wear home.
And you may wonder why I made reference to a 'silver lining'. They say every cloud has a silver lining. When the blood test showed that the chemo wasn't working and that it would be stopped, it meant that I would be free of it. My son had invited me, for the Mother's Day weekend, to go with him and his girlfriend to visit her parents on their rural property at Cowra NSW. If I had been on chemo, I would not have been up to the trip or to being a congenial visitor in the home of people I had not met before. I was going to be in reasonable shape without the chemo pump - so I accepted the invitation and we all had a wonderful weekend. Great people, beautiful property in a beautiful part of the world - great weekend was had by all :)
Tuesday 10 May 2011 @ 1.25am. It is 5 years ago today since I was diagnosed with cancer.
1. Regular blood test prior to next round of chemo
2. Results not good - cancer markers have increased, so chemo is cancelled. Bad news, good news.
3. Referred for PET scan at Royal Prince Alfred Hospital to see what's going on inside
4. PET scan this morning (Monday)
5. Visit to oncologist this afternoon for results
6. Results not good - tumours have grown slightly and there are some spots on one of my lungs which may be metastases (new secondary tumours)
7. We have run out of options for chemotherapy and I am sticking with my decision not to have surgery
8. Oncologist recommends treatment with the chemotherapy that I had way back in 2006 which did not work on the original tumours in my liver. He says that the tumours I have now are different from the original and there may be a chance that they will respond to the treatment.
9. Start new chemotherapy regime this Friday with an infusion every 3 weeks - but just a 2 hour session at the clinic and no pump to wear home.
And you may wonder why I made reference to a 'silver lining'. They say every cloud has a silver lining. When the blood test showed that the chemo wasn't working and that it would be stopped, it meant that I would be free of it. My son had invited me, for the Mother's Day weekend, to go with him and his girlfriend to visit her parents on their rural property at Cowra NSW. If I had been on chemo, I would not have been up to the trip or to being a congenial visitor in the home of people I had not met before. I was going to be in reasonable shape without the chemo pump - so I accepted the invitation and we all had a wonderful weekend. Great people, beautiful property in a beautiful part of the world - great weekend was had by all :)
Tuesday 10 May 2011 @ 1.25am. It is 5 years ago today since I was diagnosed with cancer.
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